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PubMed2000

Assessing the cost-effectiveness of pharmacogenomics.

The use of pharmacogenomics to individualize drug therapy offers the potential to improve drug effectiveness, reduce adverse side effects, and provide cost-effective pharmaceutical care. However, the combinations of disease, drug, and genetic test characteristics that will provide clinically useful and economically feasible therapeutic interventions have not been clearly elucidated. The purpose of this paper was to develop a framework for evaluating the potential cost-effectiveness of pharmacogenomic strategies that will help scientists better understand the strategic implications of their research, assist in the design of clinical trials, and provide a guide for health care providers making reimbursement decisions. We reviewed concepts of cost-effectiveness analysis and pharmacogenomics and identified 5 primary characteristics that will enhance the cost-effectiveness of pharmacogenomics: 1) there are severe clinical or economic consequence that are avoided through the use of pharmacogenomics, 2) monitoring drug response using current methods is difficult, 3) a well-established association between genotype and clinical phenotype exists, 4) there is a rapid and relatively inexpensive genetic test, and 5) the variant gene is relatively common. We used this framework to evaluate several examples of pharmacogenomics. We found that pharmacogenomics offers great potential to improve patients' health in a cost-effective manner. However, pharmacogenomics will not be applied to all currently marketed drugs, and careful evaluations are needed on a case-by-case basis before investing resources in research and development of pharmacogenomic-based therapeutics and making reimbursement decisions.

Anticholesteremic Agents↗
PubMed1990

Application of productivity estimates to psychiatric nursing practice.

Due to the current financial situation, productivity has become an overwhelming issue and decision-making device within the entire health care delivery system. Application of productivity estimates to nursing, and especially psychiatric nursing, is difficult because of the nature of nursing services and the elusiveness of productivity as a quantitative measure. With financial cutbacks expected to continue, the ability of nurses to account for the cost of their services is both timely and necessary. Psychiatric nurses should be knowledgeable of models in current use and aware of their usefulness and limitations.

Cost Control↗
PubMed2006

A patient with dementia and cancer: to feed via percutaneous endoscopic gastrostomy tube or not?

Despite the lack of clear benefits of feeding via gastrostomy tube in dementia patients, its use has been increasing. The views of health professionals, patients and their carers differ widely about the perceived benefits, which makes decision-making difficult and stressful. The palliative care approach of facilitating better communication and end-of life care planning can help avoid inappropriate gastrostomy tube placements. A case of an elderly male with dementia and two malignancies is described, and the place of the palliative care approach is explored.

Aged, 80 and over↗
PubMed1995

Hardware issues in the movement to computer-based patient records.

The health care field is making significant progress in shifting to computer-based patient records. Providers are faced with some difficult decisions about what hardware options are most appropriate. Key issues include the choice of clinical workstations vs. portable computers, the use of new client-server architecture or traditional mainframe-based systems and the role of personal computers. This special report offers an indepth assessment of important hardware trends in the records automation movement. The first story offers an analysis of the hardware implications of client-server architecture and an assessment of the long-term role of mainframe computers. The second story sizes up the potential role for mobile computing, including hand-held devices and wireless technology.

Boston↗
PubMedDate not supplied

Navigating the system governance maze.

Health care system governance today is a complex maze of concerns that assume a unique character in Catholic-sponsored multi-institutional systems. Most Catholic health care systems began with a common sponsor or mission and several shared services and gradually moved from separately incorporated entities to a system with few centralized operating functions but a governing body between the local facilities and the sponsoring religious institute. The next step was development of a managed system with consolidated services and centralized decision making. Now, many systems are attempting the most important and difficult effort--systemwide strategic planning. The phases described have required a rethinking of governance structures, and conflicts often arise during restructuring. Such turmoil requires many Catholic health care systems to develop a clearer sense of direction and purpose. To achieve their objectives, system leaders can use a governance compass that has five key points: Information. Boards must determine what they need to know, where to secure this information, and what form the information should take. Agenda. Boards must make reflective and intentional use of their agenda by reviewing and categorizing agenda items discussed in the past 12 months and establishing an agenda plan for the next 12 months. Structural mechanisms. Boards must decide structural issues such as relationships between system board and local boards, sizes of boards, and kinds of committees needed. Culture. Boards should reflect on their culture--values and traditions that have characterized them in the past--to assess whether changes are needed to strengthen or improve the culture.(ABSTRACT TRUNCATED AT 250 WORDS)

Catholicism↗
PubMedDate not supplied

The lottery of life: should organ transplants be used to even the odds?

Life is not always fair and the advantages of health and well-being are not equally distributed. Unfortunately, children can be the innocent victim of their families' misfortune. In the realm of health care, should a child be denied a specific medical treatment because his or her parents are not capable of providing the care necessary to promote a successful outcome of that treatment? How should we as health care professionals make those difficult choices? The following case and the ethical analysis describes a scenario where there was disagreement if a child's family situation should be considered in the decision to list the child for a liver transplant.

Beneficence↗
PubMed2005

Measuring the quality of child health care at first-level facilities.

Sound policy and program decisions require timely information based on valid and relevant measures. Recent findings suggest that despite the availability of effective and affordable guidelines for the management of sick children in first-level health facilities in developing countries, the quality and coverage of these services remains low. We report on the development and evaluation of a set of summary indices reflecting the quality of care received by sick children in first-level facilities. The indices were first developed through a consultative process to achieve face validity by involving technical experts and policymakers. The definition of evaluation measures for many public health programs stops at this point. We added a second phase in which standard statistical techniques were used to evaluate the content and construct validity of the indices and their reliability, drawing on data sets from the multi-country evaluation of integrated management of childhood illness (MCE) in Brazil, Tanzania and Uganda. The statistical evaluation identified important conceptual errors in the indices arising from the theory-driven expert review. The experts had combined items into inappropriate indicators resulting in summary indices that were difficult to interpret and had limited validity for program decision making. We propose a revised set of summary indices for the measurement of child health care in developing countries that is supported by both expert and statistical reviews and that led to similar programmatic insights across the three countries. We advocate increased cross-disciplinary research within public health to improve measurement approaches. Child survival policymakers, program planners and implementers can use these tools to improve their monitoring and so increase the health impact of investments in health facility care.

Brazil↗
PubMed1997

Self-care agency and factors related to this agency among patients with coronary heart disease.

The aim of this study was to assess the self-care agency and factors related to this agency among patients with coronary heart disease (N = 250) measured with a self-care inventory (Self-as-Carer Inventory, SCI). A secondary aim was to analyze the ability of the SCI inventory based on Orem's self-care deficit theory to measure the self-care agency of patients with coronary heart disease. Factor analysis yielded four factors which represent the key aspects of self-care, such as evaluation, implementation, decision-making, significance of knowledge, attitudes, motivation and physical prerequisites of self-care. The most important precondition for self-care in our study was 'appreciation and motivation to self-care'. This factor had numerous correlations with the background factors. Age, sex, socioeconomic status, employment status, health behavior, such as alcohol use and smoking, other diseases, such as diabetes, and satisfaction with sex life were related to the patients' self-care agency. It can be concluded that the self-care agency of our patients was moderate and many background factors were related to it. The SCI inventory seems to cover the self-care requirements of these patients, but the clinical use of SCI is precarious. The items are still too abstract and the questionnaire is therefore too difficult to fill in for many patients.

Adult↗
PubMedDate not supplied

End of life care in Duchenne muscular dystrophy.

End of life care for patients with Duchenne muscular dystrophy (DMD) has become increasingly complex because of new technologies, changes in medical personnel over periods of time, emergence of home health care systems, and increasing patient and family autonomy in decision-making. In this review, we discuss the medical problems, particularly respiratory and cardiac failure, faced by DMD patients. Current concepts concerning the evaluation and options for treatment of these problems are presented as well as the ethical issues involved in the care of the DMD patient. These issues include the medical indications for treatment, patient preferences, quality-of-life issues, and contextual features related to legal, institutional, religious, geographic, cultural, social, and financial factors. We also present our experience at Loma Linda University Medical Center over the past 10 years in the development of a home mechanical ventilation program for DMD patients and an algorithm for the evaluation of these patients. Many patients with DMD do well on long-term ventilation, but some find that their quality of life is less than desirable and choose to discontinue this method of life-prolongation. Many of these new options are very expensive, making the decision to use them a difficult one. Ultimately, these are societal issues that require clear reflection on matters of resource allocation that should be performed by health care professionals, citizens, and health planners.

Adolescent↗
PubMedDate not supplied

Good governance and sustainability: a case study from Pakistan.

OBJECTIVE: On the basis of a case study in Pakistan, the paper argues that good governance, characterized by transparency, accountability and meaningful community participation, plays a critical role in the sustainability of donor-funded health systems projects in the public health sector. METHODS: The Family Health Project (FHP) (1992-1999), funded by the World Bank, has been used as a case study. Critical analysis of secondary data mainly obtained from the Department of Health (DoH) in the province of Sindh in Pakistan is the major tool used for the study. Data from other sources including the World Bank have also been used. RESULTS: The analysis reveals that the existing health care system could not fully absorb and sustain major "sociopolitical" thrusts of the project, meaningful community participation and "democratic" decision-making processes being the most important ones. The hierarchical structure and management process made it difficult to produce a sense of ownership of the project among all managers and the rank and file staff. The Provincial Health Development Center (PHDC) and District Health Development Centers (DHDCs) established by the FHP did not receive adequate financial and political support from DoH and the Ministry of Health to have much control of the project at the local level. Consequently, these Centers largely failed to institutionalize a continuing training program for district level health officials/professionals. Due to lack of political support, the District Health Management Teams (DHMTs) could not be institutionalized. Community participation in the DHMTs was symbolic rather than forceful. Improved coordination among all stakeholders, more stable and competent leadership, more meaningful community participation, greater devolution of project management to the district level, and better management of resources would have resulted in more effective and efficient implementation of the project. Based on these findings, the paper introduces a Sustainable Management Approach (SMA) as a tool that can be used to ensure the sustainability of health systems projects, particularly those funded by international organizations in developing countries. CONCLUSIONS: Good governance and a conducive organizational culture are important prerequisites for incorporating any new project within an existing system. This includes prior consensus building among all stakeholders, a meaningful and inclusive participatory planning, implementation and evaluation process involving communities, political commitment, and the identification and use of appropriate leadership for project management.

Delivery of Health Care↗
PubMed1990

The appropriate use of technology (particularly in medical problems of the elderly).

Technology, particularly "high" technology, with little solid data, is often blamed for much of our increasing cost of health care. Politics and emotions are poor substitutes for accurate information needed for rational solutions. By targeting the desired outcome and studying the process needed to reach the outcome, we can make better decisions. The methods of designing, conducting and funding the studies needed to answer the difficult questions posed by the use of high technology in the elderly are available. Do we have the wisdom to use them?

Aged↗
PubMed2003

Mothers' decisions about gastrostomy tube insertion in children: factors contributing to uncertainty.

The purpose of this study was to explore O'Connor's four factors contributing to mothers' uncertainty concerning gastrostomy tube (G-tube) insertion in their children (lack of information; unclear value trade-offs; lack of support; social pressure) in a substitute decision-making context. Fifty mothers participated in one semi-structured interview at the time of their children's G-tube insertion. Children's ages ranged from 2 weeks to 17 years, slightly more than half were male, and most had a primary diagnosis related to a neurological (n = 27) or cardiac (n = 10) condition. Two-thirds of the mothers identified topics about which they wanted more information, the majority reported both gains and losses associated with their decision, three-quarters reported that they had received support during decision making, and half reported that they had felt pressure from family and health care professionals. Results indicate that mothers' decisions about G-tube insertion are complex and difficult. The existence and importance of O'Connor's factors in this context are confirmed by mothers' accounts. Because these factors are believed to be modifiable, health care professionals have the opportunity to potentially minimize the extent to which the factors contribute to decision uncertainly. It is recommended that health care professionals implement interventions focused on minimizing uncertainty.

Adolescent↗
PubMed1995

Medical futility and care of dying patients.

In this article, I address ethical concerns related to forgoing futile medical treatment in terminally ill and dying patients. Any discussion of medical futility should emphasize that health professionals and health care institutions have ethical responsibilities regarding medical futility. Among the topics I address are communicating with patients and families, resolving possible conflicts, and developing professional standards. Finally, I explore why acknowledging the futility of life-prolonging medical interventions can be so difficult for patients, families, and health professionals.

Beneficence↗
PubMed1997

National Institutes of Health Consensus Development Conference Statement: Breast Cancer Screening for Women Ages 40-49, January 21-23, 1997. National Institutes of Health Consensus Development Panel.

OBJECTIVE: To provide health care providers, patients, and the general public with a responsible assessment of currently available data regarding the effectiveness of mammography screening for women ages 40-49. PARTICIPANTS: A non-Federal, nonadvocate, 12-member panel representing the fields of oncology, radiology, obstetrics and gynecology, geriatrics, public health, and epidemiology and including patient representatives. In addition, 32 experts in oncology, surgical oncology, radiology, public health, and epidemiology, presented data to the panel and to a conference audience of 1,100. EVIDENCE: The literature was searched through Medline and an extensive bibliography of references was provided to the panel and the conference audience. Experts prepared abstracts with relevant citations from the literature. Scientific evidence was given precedence over clinical anecdotal experience. CONSENSUS PROCESS: The panel, answering predefined questions, developed its conclusions based on the scientific evidence presented in open forum and the scientific literature. The panel composed a draft statement that was read in its entirety and circulated to the experts and the audience for comment. Thereafter, the panel resolved conflicting recommendations and released a revised draft statement at the end of the conference. The final statement with a minority report was completed within several weeks after the conference. CONCLUSIONS: The Panel concludes that the data currently available do not warrant a universal recommendation for mammography for all women in their forties. Each woman should decide for herself whether to undergo mammography. Her decision may be based not only on an objective analysis of the scientific evidence and consideration of her individual medical history, but also on how she perceives and weighs each potential risk and benefit, the values she places on each, and how she deals with uncertainty. However, it is not sufficient just to advise a woman to make her own decision about mammograms. Given both the importance and the complexity of the issues involved in assessing the evidence, a woman should have access to the best possible relevant information regarding both benefits and risks, presented in an understandable and usable form. Information should be developed for women in their forties regarding potential benefits and risks to be provided to enable each woman to make the most appropriate decision. In addition, educational material to accompany this information should be prepared that will lead women step by step through the process of using such information in the best possible way for reaching a decision. For women in their forties who choose to have mammography performed, the costs of the mammograms should be reimbursed by third-party payors or covered by health maintenance organizations so that financial impediments will not influence a woman's decision. Additionally, a woman's health care provider must be equipped with sufficient information to facilitate her decisionmaking process. Therefore, educational material for physicians should be developed to assist them in providing the guidance and support needed by the women in their care who are making difficult decisions regarding mammography. The two panel members writing a minority report believed the risks of mammography to be overemphasized by the majority and concluded that the data did support a recommendation for mammography screening for all women in this age group and that the survival benefit and diagnosis at an earlier stage outweigh the potential risks.

Adult↗
PubMedDate not supplied

NIH Consensus Statement. Breast cancer screening for women ages 40-49.

OBJECTIVE: To provide health care providers, patients, and the general public with a responsible assessment of currently available data regarding the effectiveness of mammography screening for women ages 40-49. PARTICIPANTS: A non-Federal, nonadvocate, 12-member panel representing the fields of oncology, radiology, obstetrics and gynecology, geriatrics, public health, and epidemiology and including patient representatives. In addition, 32 experts in oncology, surgical oncology, radiology, public health, and epidemiology presented data to the panel and to a conference audience of 1,100. EVIDENCE: The literature was searched through Medline and an extensive bibliography of references was provided to the panel and the conference audience. Experts prepared abstracts with relevant citations from the literature. Scientific evidence was given precedence over clinical anecdotal experience. CONSENSUS PROCESS: The panel, answering predefined questions, developed its conclusions based on the scientific evidence presented in open forum and the scientific literature. The panel composed a draft statement that was read in its entirety and circulated to the experts and the audience for comment. Thereafter, the panel resolved conflicting recommendations and released a revised draft statement at the end of the conference. The final statement with a minority report was completed within several weeks after the conference. CONCLUSIONS: The Panel concludes that the data currently available do not warrant a universal recommendation for mammography for all women in their forties. Each woman should decide for herself whether to undergo mammography. Her decision may be based not only on an objective analysis of the scientific evidence and consideration of her individual medical history, but also on how she perceives and weighs each potential risk and benefit, the values she places on each, and how she deals with uncertainty. However, it is not sufficient just to advise a woman to make her own decision about mammograms. Given both the importance and the complexity of the issues involved in assessing the evidence, a woman should have access to the best possible relevant information regarding both benefits and risks, presented in an understandable and usable form. Information should be developed for women in their forties regarding potential benefits and risks to be provided to enable each woman to make the most appropriate decision. In addition, educational material to accompany this information should be prepared that will lead women step by step through the process of using such information in the best possible way for reaching a decision. For women in their forties who choose to have mammography performed, the costs of the mammograms should be reimbursed by third-party payors or covered by health maintenance organizations so that financial impediments will not influence a woman's decision. Additionally, a woman's health care provider must be equipped with sufficient information to facilitate her decisionmaking process. Therefore, educational material for physicians should be developed to assist them in providing the guidance and support needed by the women in their care who are making difficult decisions regarding mammography. The two panel members writing a minority report believed the risks of mammography to be overemphasized by the majority and concluded that the data did support a recommendation for mammography screening for all women in this age group and that the survival benefit and diagnosis at an earlier stage outweigh the potential risks.

Adult↗
PubMed1997

National Institutes of Health Consensus Development Conference Statement: breast cancer screening for women ages 40-49, January 21-23, 1997. National Institutes of Health Consensus Developmental Panel.

OBJECTIVE: To provide heatlh care providers, patients, and the general public with a responsible assessment of currently available data regarding the effectiveness of mammography screening for women ages 40-49. PARTICIPANTS: A non-Federal, nonadvocate, 12-member panel representing the fields of oncology, radiology, obstetrics and gynecology, geriatrics, public health, and epidemiology and including patient representatives. In addition, 32 experts in oncology, surgical oncology, radiology, public health, and epidemiology, presented data to the panel and to a conference audience of 1,100. EVIDENCE: The literature was searched through Medline and an extensive bibliography of references was provided to the panel and the conference audience. Experts prepared abstracts with relevant citations from the literature. Scientific evidence was given precedence over clinical anecdotal experience. CONSENSUS PROCESS: The panel, answering predefined questions, developed its conclusions based on the scientific evidence presented in open forum and the scientific literature. The panel composed a draft statement that was read in its entirety and circulated to the experts and the audience for comment. Thereafter, the panel resolved conflicting recommendations and released a revised draft statement at the end of the conference. The final statement with a minority report was completed within several weeks after the conference. CONCLUSIONS: The Panel concludes that the data currently available do not warrant a universal recommendation for mammography for all women in their forties. Each woman should decide for herself whether to undergo mammography. Her decision may be based not only on an objective analysis of the scientific evidence and consideration of her individual medical history, but also on how she perceives and weighs each potential risk and benefit, the values she places on each, and how she deals with uncertainty. However, it is not sufficient just to advise a woman to make her own decision about mammograms. Given both the importance and the complexity of the issues involved in assessing the evidence, a woman should have access to the best possible relevant information regarding both benefits and risks, presented in an understandable and usable form. Information should be developed for women in their forties regarding potential benefits and risks to be provided to enable each woman to make the most appropriate decision. In addition, educational material to accompany this information should be prepared that will lead women step by step through the process of using such information in the best possible way for reaching a decision. For women in their forties who choose to have mammography performed, the costs of the mammograms should be reimbursed by third-party payors or covered by health maintenance organizations so that financial impediments will not influence a woman's decision. Additionally, a woman's health care provider must be equipped with sufficient information to facilitate her decisionmaking process. Therefore, educational material for physicians should be developed to assist them in providing the guidance and support needed by the women in their care who are making difficult decisions regarding mammography. The two panel members writing a minority report believed the risks of mammography to be overemphasized by the majority and concluded that the data did support a recommendation for mammography screening for all women in this age group and that the survival benefit and diagnosis at an earlier stage outweigh the potential risks.

Adult↗
PubMed1997

Clinical practice guidelines in pediatric and newborn medicine: implications for their use in practice.

Clinical practice guidelines are becoming pervasive in pediatrics and newborn medicine. They have spanned a wide range of primary care practice parameters from treating otitis media with effusion, to performing complex surgery for congenital heart disease, and management of respiratory distress syndrome and coordinating discharge from the neonatal intensive care unit. Administrators believe that using clinical practice parameters reduces health care costs, improves quality of care, and limits malpractice liability. Practice parameters and guidelines have grown in use because powerful interests-third-party payers, insurers, and health maintenance organizations, as well as hospital administrators bent on reducing variable costs of care and contracting for capitated care-champion their development, implementation, and monitoring. Economic credentialing of physicians with excessive variances without risk-adjusting for other than average patients is problematic and remains unchecked partly because of the fundamental characteristics of the evolving health care industry in which costs are more easily measured than quality. For highly autonomus physicians this standardization of medical decision making may represent a difficult transition into corporate practice by realigning traditional values of the doctor-patient relationship. However, because guidelines are almost certainly here to stay, pediatricians and neonatologists need to think critically about how their content and method of implementation, monitoring, and modification may influence medical teaching and decision making in the future. If guidelines are introduced primarily as a cost savings or containment tool that ignores the impact on the quality of care and restricts necessary care for infants and children, especially those with chronic illness or who are developmentally at risk, then neonatologists and pediatricians must be quick and determined to challenge the potentially damaging use of practice parameters or guidelines. Furthermore, there are many medicolegal implications of guideline implementation that may not favor physicians and leave to hospitals, insurers, and ultimately the courts decisions regarding evidence-based practice. In this review article, we pay special attention to the guidelines developed in newborn medicine. We discuss why and how guidelines are developed and critically evaluate the available evidence describing potential benefits and drawbacks of guidelines in general. There are legal implications to the implementation of guidelines, and guidelines may increase provider susceptibility to malpractice allegations. Neonatologists and pediatricians should critically analyze the following questions when guidelines are being developed: Are clinical practice parameters the most effective means to reduce the costs of health care, or improve the quality of health care services while reducing the need for and protecting physicians from malpractice suits? Or do clinical practice guidelines more closely resemble an audit system developed by health care organizations, insurers, and others including government-sponsored health care to appease powerful interests-with limited evidence for promise and perhaps potential negative cost, quality, and malpractice liability implications? In pediatric and newborn medicine there is limited evidence that guidelines have achieved the desired goals and further analysis of their process of care and the costs of implementation is warranted.

Health Services↗